WP3 D3.2 Recommendations for digitalised surveillance systems of severe infectious diseases leading to hospitalisation

Severe infections place a significant burden on healthcare systems, particularly in critical settings such as emergency departments, infectious disease wards with isolation facilities, and intensive care units. Reliable and robust surveillance of these infections is therefore essential, especially during widespread epidemics or pandemics. Importantly, severe infections also serve as a reliable indicator of disease trends, as they are less influenced by factors such as testing capacity or individuals' willingness to seek medical care and get tested. An adequate surveillance system for severe infections also enables ongoing monitoring of vaccine effectiveness.

In this Joint Action, it became obvious that surveillance of severe infections is carried out in various ways. The member states taking part in Work Package (WP) 3 have different situations, capabilities, and tools for surveillance. In the beginning of this Joint Action, during spring 2023, a survey on the main characteristics of the surveillance systems of severe infections was conducted among the countries participating in WP3. Information was collected for example on the legal basis, coverage, extent of digitalisation, and coding systems used. The survey report is available at https://zenodo.org/records/14887202. Based on the results of this survey, eight pilots were designed.  

In nearly all countries, the COVID-19 pandemic prompted major surveillance efforts. In some cases, new data sources became available, existing surveillance systems were improved (e.g. through more timely data flows), and valuable experience was gained in data handling and linkage. However, the response to COVID-19 often resulted in ad hoc solutions that could not be adapted for monitoring other infections or situations post-pandemic. In WP3, a joint analysis was conducted to identify the main determinants and drivers behind the improvements observed during the COVID-19 pandemic, as well as the key challenges or obstacles that remained afterwards. More details can be found in the UNITED4Surveillance D1.1 Progress Report in section “3.3 Description of the work WP3: Hospital surveillance”, available at https://zenodo.org/records/15753676. This information was also considered when planning the pilots, particularly in relation to integration, interoperability, and the digitalisation of health data systems. 

In general, even after the improvements brought about by the pandemic, it was evident that the pilot countries were at different stages in their journey towards full digitalisation of healthcare data. The pilots were specifically designed to enhance surveillance systems in each country. In the Netherlands, a thorough stakeholder analysis was carried out and in Norway all data sources were carefully mapped to be able to make a blueprint of a robust surveillance system. Similar work was carried out in Slovenia and in Poland, as data models, plans, definitions were produced even though ICT-resources or data ownership/legal issues prevented the actual data linkage. In Latvia, piloting led to a well-received electronic notification form, although ICT -resources as well as legal constraints prevented further linkage of the data. The lack of common grounds on the national integrated system led Italy to improve surveillance in intensive care units (ICUs) in the Tuscany region. In Malta efforts focused on establishing an automated gastrointestinal disease surveillance system using hospital data, liaising with hospital to improve data sharing and standardisation as well as initiating the development of an IT infrastructure that would allow for real-time automated integrated surveillance of infectious diseases.  In Finland, laboratory and clinical data linkage at the national level was further analysed while work was carried out to update the legal basis for continuous data linkage.